While grief is fresh, every attempt to divert only irritates. You must wait till it be digested, and then amusement will dissipate the remains of it.~Samuel Johnson

It’s a good thing that my caregiver/husband and I get along, because I never would’ve imagined depending on him so much.

In the beginning of this newfound dependency on others, I was not a happy camper. I probably was defensive to the very people that were trying to help me. It’s just that we all have this picture of what life should look like and my reality just was not matching up.

Nowadays it seems I need help with just about everything. And to make matters worse or more complicated for all involved, I don’t need that help all the time. This confuses the person, normally my husband, as to when to help and when not to help.

Does that make sense?

I know he is only concerned about me. In the meantime, I’m so busy trying to hang on to my last bit of independence by continuing to do what I can on my own. I think this is a good thing.

I also have to accept there are things I can no longer do safely by myself. For instance, I need help getting on and off the toilet. It’s not every time I go, mostly just during the night or early in the morning. The other day, I had a nasty fall in the bathroom and it scared the life right out of me. Mind you my bathroom was newly made handicapped accessible. So, it seems no matter what, falls can happen.

I need help with transferring from one chair to another. That is, transfers from my scooter or wheelchair to the dining room table or to my favorite reading chair. Something I used to do with no problem.

I’ll be honest with you. It’s hard. To make it easier I quickly mourn the loss then I move on. The thing is, if I persist on focusing on what I’ve lost here, I will lose and MS will win once again. And it has taken away so much from me already.

I try to remember that our job as MS fighters is to make the most out of what we can do, no matter how small.

We all need to mourn and hopefully move forward. My disability right now is mostly cognitive. I had a garage sale and couldn’t make change. I had to rely on others to handle the money. It was a leveling experience. I can’t babysit my 18 month old granddaughter as I forget she is under my care. The doctor just put me on Ritalin to help with concentration. I am on two Alzheimer’s drugs that have also helped. This is my new normal and forward I go.

Part 2, Nicole, I just happened to notice that, coincidentally, my pre-scheduled post for midnight tonight is also about losses. I’m afraid that, in that post, you will notice that it’s harder for me to be philosophical and wise. Here’s a preview:

When Jim asks me why I didn’t call him to help, I usually feel that I’m not sure if I can do something until I try. When I try and succeed it gives me such a boost. So I probably will continue to not ask for help, because you never know! As they say in the Sonic drive in commercials, you don’t know what you don’t know!

Sometimes, the losses seem so unfair. How could someone like you who has so much to offer be stricken by something like MS? I try not to go there too often with my own situation, but it does come up. As I am wont to do, I wrote about it in a poem. Someone with MS, whom I’ve never met, but who bought my book, told me she keeps the following poem above her desk. I read and reread it myself because I often need to be reminded of this:

Fairness

I keep believing
life should in essence be fair
except it is not.

Injustice may rule.
Tsunamis, genocide, and
disease so affirm.

The question becomes
what to do with the hand dealt
to keep light in life.

Yes, indeed, I do have a choice about how I deal with what has happened, and I can still bring light into my life.

You have touched on what to me is the most difficult aspect of MS.
It kills me to ask for help, but I have also almost killed myself doing something that I should have asked for help! It’s a vicious cycle.
We don’t do these things to be rebellious–only to attempt to maintain some independence!
Keep working it Nicole.

At a recent PCP visit, my doc asked my 13 year old daughter if I ask for help. My daughter replied, “not much. She usually says, ‘no, I got it.'” My doc went on to say how she finds it interesting that people who need help have a hard time accepting help from other’s and those who don’t need help beg for it. I’m at 6.5 on the EDSS and I have found that the grieving process of what I used to do and be, is exactly that; a
process not an event. That same doc told me 4 years ago that people living with serious chronic illness never stop going through the grief process that there are peaks and lows and periods of leveling off. I’m very conscious of my progression with reminders of my abilities dwindling over time. I keep giving each day my best shot in the face of demyelination. Cheers to you Miss Nicole!

I so identify with everything you have said here. I used to love cooking large meals for the family and keeping a pristine house…I even vacuumed twice a day sometimes. It is so humbling, frustrating, and ,well sad, not to be able to do these things anymore. I also worked as a stockbroker for 23 years and even worked second jobs for fun. I noticed that you were a Chemist in your work history and can only imagine how hard it was to give up the economical independence, or should I say economical self respect. It has been hard for me…even though I have a wonderful husband I am now so dependant on. He does all the cooking and even vacuums occassionally, to keep me sane. But I have learned to just ignor the dust on the floor boards and move on to more important things…like reading a good book…or following you and “MY NEW NORMALS”. I am so optimistic about the future of stemcell research…so maybe I can become obcessed with vacuuming in the future and you can do some nice things for your husband..

Interesting comments made by Nicole and I wish her luck for her future. As a carer for my wife Jan who also has MS, I can speak from experience support + understanding and the timing of it can take a lot of practice to get right.

Thank you for sharing Nicole. I can definitely relate to what you are living through. My husband has been wonderfully supportive as my needs have shifted (moment-to-moment!) and I often remind myself how fortunate I am to have him in my life. Feeling and expressing my gratitude to him has become a very significant part of our MS experience, as has my developing relationships with others (nurses, therapists, etc.) who can also help. (My husband resisted this at first, but he has come to appreciate the additional hands — not so much at night, but definitely during the day!)
Good luck to both of you — this is a very unique journey…

Oh, I love your site and your eloquence and I get your frustration. I don’t know how many times I’ve said “I remember when I could do (fill in the blank)!”. Overzealous caregivers, like my former spouse, can annoy me, although living by myself certainly can feel scary. I have worked out a phone number tree for my refrigerator in case anything should happen, like a fall. I have had a spasm of the contracture variety that a physician – yes, you read that right – actually said, “how are you living with that?”. Well, we just do, am I right? Would I rather be working? No doubt about it. But I feel like a hothouse flower in a world which is completely clueless when it comes to accommodating this type of plant.

Thanks for your real, open and enlightening words. It means a lot to us hothouse flowers out here.

Thank you, Nicole, for your comments, I have had MS for over 40 years, with lots of ups and downs, but I have developed a mantra that reminds me to appreciate each new day: “Life is good; I’m still here!” As long as we show up, we can enjoy what life has to offer. And the alternative (pushing up daisies) is not something I’ll be ready for any time soon. Your blog is encouraging, insightful, and always interesting. Thanks for helping all of us to keep on keeping on.